Young Waleed's ego sometimes gets the better of him. That wouldn't be the first time. But overall it was a good piece for us, with a clear strong ending.
Emerge announces the appointment of a Medical Director: In my opinion, largely based on a talk I heard him give to an Emerge conference quite a few years ago, Dr Schloeffel is well-meaning but entirely the wrong sort of person to represent a disease community to the medical profession. The fact that Emerge's Board and CEO chose him makes me despair.
I saw that yesterday and my heart sunk. Dr. Schloeffel sells homeopathy at his clinic and dabbles in Lyme disease based on overseas blood tests. His methods are complete pseudoscience. Anne wilson compared me/cfs with adrenal fatigue in her first email as ceo. I fear all the good work done by Dr Heidi Nicholl will go down the drain. Hope I am wrong.
How much support do you think we would get? Probably a lot of ME/CFS patients are very happy with the kind of 'integrative' approach he takes. And even for people who are concerned about Schloeffel as Emerge's Medical Director, some of them, possibly even me, might find a petition specifically targeting an individual, with all the promotion of it that would be required, too confrontational. I doubt that other ME/CFS institutions would want to interfere in Emerge's appointments. ANZMES has their own issues with a Medical Advisor with questionable beliefs, so is unlikely to point the finger at another organisation. We desperately need someone to take some leadership on getting rid of ME/CFS doctors applying nonsense approaches, but it's hard to see where the leadership would come from. Emerge is doing the exact opposite, effectively endorsing unscientific medicine. When there was the problem with the MEA patron appointment, people speaking up on social media and writing letters was effective.
Don't have much experience of Emerge Australia but I can't remember anything negative- they have run excellent conferences and I'm sure done a lot more - what's happened?
The CEO who drove a lot of the positive change left to take up a new job. The new CEO didn't know about ME/CFS and seems to be happy to take advice about what it is and what should be done about it from 'experienced ME/CFS doctors'. I guess in most other medical conditions, that would be a reasonable thing to do, but it is dangerous in ME/CFS. I have no idea what is going on in the Emerge Board that has allowed this to happen.
Yea sometimes people appoint someone on the basis of something they did elsewhere - without considering the context. Speculation of course.
ABC News 24 had a segment yesterday on Long Covid. The doctor interviewed was typically clueless and referred to ME/CFS as "chronic fatigue" (as did the interviewers) for the whole interview. He claimed that the reason that we know so little about ME/CFS is just lack of funding rather than acknowledging the prejudice and dismissal of the medical community. https://www.youtube.com/watch?v=anhQtdCwYuQ Not long after, they interviewed an ME patient and advocate, Natalia Hodgins, who effectively and eloquently refuted everything that had been said: I hope this can be shared far and wide as it really deserves a bigger audience. (Facebook links don't show up for me on the forum due to ad-blocking settings, so I'll put a link to it here as well in case. Let me know if it doesn't work.) Edit: here's a snippet of her interview on twitter for easy sharing.
The link worked for me @Art Vandelay. Thanks for sharing this - I thought Natalia did a brilliant job.
Email from Griffiths University/NCNED about a forthcoming LDN trial: (I wonder who has funded this) We have an LDN thread here. Making a case for LDN (Low Dose Naltrexone)
The FND bandwagon rolls on... https://www.theguardian.com/lifeandstyle/2022/mar/03/how-to-move-exercising-with-fibromyalgia
Yeah, the photo of the pool in the article reminds me of rather severe upper back pain I would get from walking in chest-high water close to body temperature. Pressing my body against the weight of water while walking zombie-slow resulted in enormous pain afterward that lasted a week. So, yes, every activity must be scrupulously monitored for "side effects."
This is a sympathetic article about severe ME and the difficulty in getting support and medical care in Australia: I found this very odd: There's no mention of Long Covid in the article, but LC is largely invisible in Australia at present. edit: her Dad runs a Facebook page for her which does a good job of depicting severe ME: In it for Ella.
Not really news, more an anecdote. After having an ear infection for over 2 months, I finally got up courage to go get some antibiotics. I saw a GP intern, she was doing a 6 month placement in the clinic, not her first. She didn't know what ME/CFS was (I had had to fill out a new patient record of illnesses), but had heard of chronic fatigue syndrome. She had not been taught anything about it, well, nothing she was telling me, and said that she'd never come across anyone with it. She had heard of Long Covid, but not in her training. She didn't know much about it, didn't know anything about its management. This is a new GP, completing her training, and no one has told her to watch out for signs of Long Covid in the patients she sees, or given her any ideas on how to manage it.
For this particular GP it’s good for subsequent patients that she came into contact with you @Hutan Obviously big issue for medical education generally tho
